About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Monday, February 22, 2010

Hi Everyone!

I've been wanting to sit down and blog a bit, but hadn't made the time until now! Mark says I shouldn't whine, but I don't look @ this in that way! It occured to me the other night, as I was getting ready for bed and putting my mist cup on my trache - that I really have a hole in my neck! UGH! Even though I know it makes things easier all around for me to have this trache - it certainly wasn't easy getting it done and it isn't much fun maintaining it either! The very best thing about it is that I don't need it to breathe, I only need it when I have a procedure, because I am limited right now as far as how wide I can open my mouth and this makes it difficult for the anesthesiologist to intubate me! See photo: The mist cup is attached to a long, blue hose that is attached to the humidifier that sounds like an air compressor! Poor Hanz - that used to scare him in the beginning, but he is used to mommy having to sleep with that loud thing now! See the pile of pillows behind me? The first pile is covered in a twin size allergen cover because I'm allergic to dust mites - actually the entire bed is covered in a king size allergen cover. The top pillow I need for the neck support and has it's own pillow case allergen cover.

I've really no right to complain about anything - I was just telling Celia that over breakfast on Sunday. I have everything I need to help with my avm situation: whatever I need monetarily - thanks to such a generous family! Complete love and support from my family and friends, so many prayers, novenas, and Masses said for us! Our faith and wonderful doctors, physicians assistants, anesthesiologists and nurses that are outstanding! It has been a very long road though, and I like sharing with you some of what I go though, so that you can really feel like you are experiencing this with me! This is OUR Avm journey!

There sure are days that I would love to call in sick to work - but that would only mean disappointing myself, knowing that I could try a little harder and make the best of my situation! Every day I travel to work with a "cart" full of all my needs - my wound care bag - in case I should have a "bleed" and need to put a dressing on the left side of my face where I'm still healing from a wound caused by alcohol tracing back out on to my skin and "burning" it. I have NOT had a bleed @ all since we got back from CO in late January! That is so awesome! Used to be, I could be sitting @ work when I would hear a co-worker say, "You're bleeding"! Yikes! Put pressure on the area and get it to stop! So glad that is behind me for now! That takes a load off right there! Unfortunately though, I am getting some drainage from my left ear, so that is an uncomfortable feeling. I have a "hole" in my eardrum, so I can't hear from my left ear! That's frustrating to my co-workers I'm sure, that I'm constantly asking them to repeat something! We're hoping that can be repaired after this whole avm nightmare is overwith! I can also hear my pulse in my ear constantly - 24/7, so I try and put that out of my mind!

Other things in my cart include my medical bag that carries all my prescriptions! I have to write everything down that I'm taking or I'll never remember it! Must have snacks - especially if I'm on steroids - I'm ravenous and must have snacks! My favorites include kettle corn, poptarts, danishes, candy corn and juice! Plus whatever I take for lunch! I always carry a book and some magazines that I can read during my lunch if I dine alone in our office breakroom and of course I bring Saba with me to work every day! Saba is my Build a Bear that goes with me to every procedure in CO since I got her! She makes me happy and I love dressing her in cute outfits and she sits on my cd player on my desk! I had a lady that works across the hall from me ask about my bear. She thought that maybe I brought her to use her in some work related way. No, I told her, "the bear is mine, her name is Saba and she makes me happy, so I bring her with me to work every day"! Lots of other people have stuffed toys in their office - I just like changing the way mine looks and I don't want to leave her alone @ the office @ night! I'm surrounded by photos of Hanz on my desk and bulletin board, so I try and make my 8 hours @ work as pleasant as possible! I have a very understanding supervisor that really takes into account everything I'm going through and is very happy that I give 100% to my job! I love what I do and every day is an adventure!

Almost 2 weeks ago I had started feeling pain on the left side of my face. I was in denial that I had a possible ear infection. I wasn't wanting to be admitted to the hospital and put on IV antibiotics as I've had to be a couple of times in the past! I finally gave in and went to see my primary care physician and I got a shot in each hip and some antibiotics, so I finally got that pain under control! Taking steroids lowers your immune system, so I tend to get those painful ear infections! OUCH! Trying to keep my pain under control @ work gets tricky @ times - I was taking 3 different pain killers and it still wasn't helping - until I went to my doctor and got an antibiotic! I am such a happy camper when I don't have to deal with pain! I get people that work @ the courthouse actually stop to ask how I deal with so much and still look so happy and full of energy! It's all in the medication! No, it's all the love and support I get from all of you! I do know how very blessed I am! Do you know what my amazing husband Mark did the other day? He changed out my entire trache completely - by himself! Our dear friend and neighbor Terry Serna is a respiratory tech. and she had changed out my trache the first two times - and now Mark felt ready to do it on his own and he did a fantastic job! The other day I just looked at him and thought, "Wow, this man is taking care of me and patiently waiting for me until I am feeling better"! Not only does Mark take such great care of me (Mark always checks the water level in my humidifier mist cup I strap on my trache @ night), he is my wound care expert, ear drop applier, ointment slatherer (is that a word?) - but he takes wonderful care of Hanz! Our baby Hanz brings us both so much happiness - Hanz has been the best distraction for me from this avm! Mark bathes him, cuts his hair, trims his nails and cleans up after him. I do a little of the latter and feed him (I share my sushi with Hanz!) and love him a LOT! We both enjoy taking Hanz for a walk when we get home from work and you should see Hanz just strutting up ahead of us - just loving that his mommy and daddy are walking him! Of course he's high maitenance like his mommy! We don't go walking until we make sure we have poop bags, wipees if needed, treats for when we reach the end of the street - Hanz knows to sit, he gets a treat and then we pick him up to cross the street! Water of course in case Prince Hanz gets thirsty on his walk! Hanz was such a hit the other day when we picked up some chicken @ Churches for dinner! Several of the workers gathered around the drive thru window to admire our cute kid!

My next trip to CO will be March 10-12th and this time Celia will come with me! We will be meeting @ Dr. Yakes office, and Dr. Hepworth (my new ENT in CO) will be there and both will talk to us about why Dr. Hepworth feels he is ready to debulk the area under my chin, and Dr. Yakes wants to wait and take care of more of the avm by doing more embolizations before we even think of debulking! Yowza! Just don't let me bleed to death, ok?

My meds mess with my sleep schedule and that disrupts poor Mark and Hanz too! The pain killers make me very drowsy, and when I'm on steroids, they make my hyper! Mark has just learned to take it in stride if he wakes up @ 4 a.m. and I'm sitting up reading! There are times I'm on 2 hours sleep and I'm fine - until I crash off the steriods and sugar rush I've been on after a few days!

I must have jixed myself, because I had a minor bleed today @ work. Totally my fault! I put some antibiotic ointment on my scab on the left side of my face - this ate away @ the scab and next thing I knew, the kerchief I was wearing felt wet on the left side! Sure enough, I looked in the mirror to find I was bleeding. It was't arterial, but a trickle of blood that I needed to get stopped asap! Grabbed my wound care bag and headed to the bathroom! Soon as I wet a paper towl and put pressure on the area, it stopped bleeding right away! I ended up having to change out most of the trache on my own! Usually, my friend Diana helps w/my medical stuff, but she was @ a Training for the next couple days! You know how it is when you look in the mirror - everything is backward - so I put the trache collar on inside out the first time, but then was able to fix it and put in a new drainage sponge too - TADA! Good as new! The only thing was, I felt a bit exposed w/out having a clean kerchief to replace the one I had gotten blood on! Note to self: add clean kerchief to cart and extra polo as well!

Let's see .... what other kind of fun have I been having? Oh yeah! I had gotten away from using the Therabite because I always seemed to have another fire I had to put out that really needed immediate attention! Now, I can barely open my mouth to eat so I have no choice but to get to work on that Therabite again! From having these procedures, it has limited the amount of space I can open my mouth - and the reason that I ended up needing the trache - because anesthisia could't intubate me properly anymore! So, this is another part of my routine, making time to work w/the Therabite!

The last month I had been dealing with an ingown toenail that I decided needed to be taken care of! Mark had seen a Podiatrist a couple of years ago, and I really liked her, so I had an appt. w/Dr. Phillips this afternoon! She removed my left, big toenail! Gah! She said I had better meds for pain already than anything that she would have given me, so I should be fine! The numbness wore off a few hours ago, so I'm feeling some discomfort! During my office visit, I thought she would be struggling to pull off that toenail - but I didn't even feel a tug! She's my new best friend! Ha, ha, ha!

Oh! It's cold out and Mark made the most delicous pot of chili and some corn bread johnny cakes! YUMMY! Food tastes better on steroids or some tastes differently, but dang this was good! Poor Hanz kept hoping for a little taste, but all I could give him really was a bean or two! I'm ready to have it all over again for dinner tomorrow night!

Ok, it' off to iron my clothes for work and then to sleep! Hopefully, by tomorrow, I can insert some photos on to this blog! Good night! Thank you everyone for all the love and support you give us!

Mark & Cyndi Schuman

P.S. 2/27/10 - I can finally post some photos! One I had already mentioned earlier - me with the mist cup humidifier I'm attached to every night. Of course Mark and Hanz - the loves of my life! An extra photo of Hanz because he's Mommy's Angel!